I met a widower last week who told me about his wife’s breast cancer. She had received surgery then chemo and radiation, and for a few years the cancer went into remission. Then it returned. They fought it again, but this time with less success. With kids in school and hospital bills filling the mailbox, it was a struggle for my new friend to keep his head above water. He held down his job, prayed, and looked for measures of grace in it all.
There were some. The college community of which he was a part poured out its support for the family. A doctor, knowing the complexity of the bills the family received (one was literally 35 feet long!) forgave a $5,000 bill.
But in the end, the family had to “bring in hospice.” Four days before she died, the hospice staff came to the house, tried to take care of her pain, manage her symptoms, and offer social and spiritual support. They were great, the man said, and the family was shocked at the level of care hospice provided.
But there was one complaint, he offered. They were overly aggressive in treating the pain. His wife was in plenty of pain, and it needed treating. But he and his wife, he believes, would have traded some pain for some level of lucidity. Instead, she was knocked out by the morphine.
I can’t help but wonder if they’d entered hospice sooner they might have had the care they wanted.
“Hospice was great,” I was told, “but they just don’t want to allow any pain.” It’s true. As a hospice volunteer, I know that pain is a bad word to nearly every hospice worker. I was trained that pain is anything that the patient says it is. And it should be treated. Hospice people tend to treat pain aggressively. They see a lot of it, after all. And they see how difficult it is to manage once it’s out of control, and they know how challenging it is for a patient and family to face death when there is significant pain. But in this case, the woman’s daughter never got to say a proper goodbye. She had expected and looked forward to the last words said on her mother’s deathbed. Instead, she only had a comatose mom, drugged up on morphine. My widower friend, nine years later, was still pained.
But with more than four days of care, I do think hospice could have balanced out the pain medication to a more desirable level. They’re good at it, and hospice workers are responsive to the needs of the family and the patient.
So what is the right time to enter hospice?
When a patient no longer desires to be cured.
Hospice isn’t where you go or the people who care for you right before you die. It’s true that for Medicare to pay for it, a doctor has to certify that the patient has less than six months to life. But that’s a fuzzy time line, because there’s usually no way to tell six months out. And the benefits don’t get cut off after six months. As long as the hospice organization can verify that the patient continues to decline, the patient will stay in hospice under the Medicare benefit.
So, whenever the patient and family are ready to say that they no longer desire to pursue a cure for whatever disease presents a threat to the patient’s life over the next several months to a year, then hospice may be a good idea.
When the time to die is coming, but not yet.
Hospice wants to help people live well at the end of life. People who are dying are not dead. They still have hopes, dreams, ambitions, and desires. Even if hope for a cure is not realistic, hope for all kinds of things in life is not only possible but quite important. Hospice is great, or rather, hospice is at their best when they’re helping a dying person to live to her fullest.
When rest and peace are better options.
Pursuing medical treatment is not only draining on your finances, but on time and energy as well. Dying well is not a passive process. It too takes time and thought and effort–and these things are not available when all that energy is spent fighting a disease. Fighting is important and necessary. But there does come a time to transition to preparing for death. At that time, rest and peace are the right options.
Hospice is not the group that you “bring in” when death has nearly arrived. Instead, it is the stage you enter and the people who help you, when the time to actively fight disease has ended but the time to finish up life is just begun.